Introduction

The "Hotel Melanoma" moniker is a metaphor for living with my particular brand of cancer. Except for those lucky few of us deemed "cured", all we cancer survivors are guests of one of the many, many branded hotels in the "Hotel Carcinoma" chain. We can check out any time we like, but we can never leave. Meanwhile, let's be livin' it up; and please support cancer education, prevention, and treatment research.

Thursday, June 27, 2013

I’m often intrigued by the Google search queries that lead unsuspecting ‘net surfers to my blog. A recent favorite is “melanoma paranoia hypochondria”. I’ve no idea whether the searcher found anything of use here, likely not, but just in case they ever come back I’ll belatedly attempt to address the subject.

Melanoma Paranoia Hypochondria, which I’ll shorten up to “melanoia” for purposes of this post, is a psychiatric malady quite common among we inmates at the Hotel Melanoma. Forever after our check-in, we are incapable of experiencing any ache, cough, bout of nausea, you name it, without wondering and worrying whether it might be an early symptom of recurrence or metastasis. And we spend way too much time obsessively and meticulously inspecting our mottled hides, searching for that new primary tumor that we’ve been told we’re at an elevated risk of developing.

I myself have experienced recurring bouts of melanoia during my extend NED stay at this ‘resort’ hotel and, dag nab it, it’s not entirely my fault. My experience is that I can’t show up on a medic’s doorstep with a seemingly routine medical problem without my history of metastatic melanoma coming up in the course of the conversation and, quite frequently, some subsequent diagnostic procedure to “rule out” that the problem is melanoma-related. A relatively minor case of shingles has led to a chest and abdominal CT scan. Retinal swelling discovered by an optometrist during a routine eye examination has launched a same-day visit to my favorite university hospital for diagnostic work to rule out that a melanoma tumor had cropped up in the vicinity. While I’ve worked pretty hard to convince myself that, yes, I really can have some medical issue in this 60th year of my boomerhood that has zip, nada, zilch to do with melanoma, conscientious and vigilant healthcare professionals continue to stoke my melanoia.

So, dear searcher, if you too are experiencing melanoia please chill out, cut yourself some slack, and know that you are so not alone.

And you may find yourself living in The Hotel Black
And you may find yourself in a doctor’s part of the world
And you may find yourself beneath the squeal of a large magnetic field
And you may find yourself in C’s ‘ beautiful’ house, with a ‘beautiful’
life
And you may ask yourself-Well...How did I get here?

Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/after the sun C’s gone
Rest of a lifetime/doctor probing under gown.

And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large magnetic field?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful life!
Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/after the sun C’s gone
Rest of a lifetime/doctor probing under gown.

Sane as I ever was...Sane as I ever was...Sane as I ever was...
Sane as I ever was...Sane as I ever was...Sane as I ever was...
Sane as I ever was...Sane as I ever was...

Doctor is solving...and doctor removing
There is spot here at the bottom of emotion
Spare me the spot here at the bottom of emotion
Remove the spot here at the bottom of emotion

Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/with the silent doctor
Under the spots and moles/there is cancer underground.

Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/after the sun C’s gone
Rest of a lifetime/doctor probing under gown.

And you may ask yourself
What is this ‘beautiful’ house?
And you may ask yourself
Where does scan light ray glow?
And you may ask yourself
Am I right?...Am I wrong?
And you may tell yourself
MY GOD!...WHY HAVE I SUNNED?

Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/ with the silent doctor
Under the spots and moles/there is cancer underground.

Letting the days go by/let the doctor hand me gown
Letting the days go by/doctor probing under gown
Into the blue again/after the sun C’s gone
Rest of a lifetime/doctor probing under gown.

Sane as I ever was...Sane as I ever was...Sane as I ever was...
Sane as I ever was...Sane as I ever was...Sane as I ever was...
Sane as I ever was...Sane as I ever was...

Monday, June 24, 2013

Just a little lyrical nonsense for my new ‘bodyguards’ at the University of Colorado Hospital Dermatology Clinic, to the tune of Paul Simon’s “You Can Call Me Al”…

A man blogs ‘bout sun C
He says why am I lost in the riddles now
Why am I lost in the riddles
The best of my hide is so scarred
I fleed a photo-opportunity
I want long stop at remission
Don't want to end up a scartoon
In a scartoon graveyard
Moledigger Moledigger
Docs skin a new fright
Scars today and I’m well-skinned more
Mr. Fearbelly fearbelly
Get these spots away from me
You know I don't find this stuff amusing anymore

If you'll be my bodyguard
I can be your long lost pal
I can call you M.D.
And M.D. when you call C
You can call me pal

A man blogs ‘bout sun C
He says why am I short of attention
Got a short little span of attention
And wo my frights are so long
Bare my hide, man’s tannin’ free
What if I lie here
Who'll be my mole-model
Now that my mole-model is
Gone Gone
C ducked back down the alley
With some holy-moly clin’cal fast-paced cure
All along along
There were incidents and accidents
There were threats and scan elations

If you'll be my bodyguard
I can be your long lost pal
I can call you M.D.
And M.D. when you call C
You can call me pal
Call me pal

A man blogs ‘bout sun C
It's a C with a strange world
Maybe it's the Third World
Maybe it's his first time around
He doesn't speak the language
He holds no currency
He is a foreign man
He is surrounded by the sound
The sound
Battle in the clinic place
Scanner things and more brands of drugs
He looks around, around
He sees angels in the architecture
Skinning in infinity
He says Amen and Hallelujah!

If you'll be my bodyguard
I can be your long lost pal
I can call you M.D.
And M.D. when you call C
You can call me pal
Call me pal

Saturday, June 22, 2013

Thunderstruck. What a fitting adjective to describe the mental state of a newly-diagnosed cancer patient. You’re shocked, confused, scared, angered, and frustrated-- but first and foremost just plain astonished that this could be happening to you and now. Out of the blue and in an instant, your life track is derailed and the arrogant and foolish illusion that you’re in control is shattered. Over time, perhaps slowly but always surely, you come to realize that nothing will ever be just like it was before you checked into the Hotel Carcinoma. And, at least for some of us, that just might prove to be an unexpected blessing of our check-in?

To the tune of AC/DC’s “Thunderstruck”…

I was caught
In the middle of a crazed mole track (Thunder)
I booked rounds,
And I knew there was no turning back (Thunder)
My mind raced
And I thought what could I do? (Thunder)
And I knew
There was no help, no help ‘til through (Thunder)
Sound of the drugs
Beatin' in my heart
The thunder of drugs!
Tore me apart
You've been - thunderstruck!
Blown down C highway
Broke the limit, we paid a ton
Went up to clinics, yeah clinics
And we had some ‘fun’
We met some cures,
Some doctors who gave a ‘good time’
Broke all the rules, played all the tools
Yeah, yeah, they, they, they blew our minds
And I was shakin' at the knees
Could I come again please.
Yeah the M.D.’s were too kind
You've been - thunderstruck, thunderstruck
Yeah yeah yeah, thunderstruck
Oh, thunderstruck, yeah
Yeah
Now we're shaking at the knees
Could I come again please.
Thunderstruck, thunderstruck
Yeah yeah yeah, thunderstruck
Thunderstruck, yeah, yeah, yeah
Said yeah, it's alright
We're! Doing fine
Yeah, it's alright
We're! Doing fine
No whine
Thunderstruck, yeah, yeah, yeah,
Thunderstruck, thunderstruck, thunderstruck
Whoa baby, baby, thunderstruck
You've been thunderstruck, thunderstruck
Thunderstruck, thunderstruck, thunderstruck
You've been thunderstruck

Sunday, June 16, 2013

My favorite melanoma oncologist (f/k/a Dr. Death) has kicked me halfway to the curb, suggesting that I can start seeing him only once a year and visit the folks at the hospital’s dermatology clinic in between. I guess I’ve officially reached the welcomed stage of being a boring patient. I drug my feet for a while, because I dislike breaking in a new set of medics and filling out the inevitable duplicative paperwork. But last week I ‘celebrated’ my 60th birthday with a first-ever appointment with the ‘just skin doctors’.

I was quite relieved that I didn’t “SPOT Orange” anywhere in the clinic. Way too many unfortunate souls had to experience the visual assault of inspecting me up close and personal in my birthday suit. There was some scraping, freezing, and mole mapping involved. A third-year resident, who upon learning of my melanoma history seemed quite surprised I’m not dead, told me I’m covered with moles that could become new primary melanoma tumors. So tell me something I don’t already know. But I’m fine, and for that I’m grateful.

Hoping to stay exceedingly pale and boring under the keen and watchful eyes of my new dermatologists, I’ll sign off with the Hotel Melanoma take on The Who’s “I Can See For Miles”…

I know you've had mean C, now here's a surprise
I know that you have 'cause there's magic in my eyes

I can see for miles and miles and miles and miles and miles
Oh yeah

If you think that I don't know about the little tricks U plays
And never see you when deliberately you put skin in fry rays

Well, here's a poke at you
You're gonna hope docs skin true
You're gonna lose that smile
Because all the while

I can see for miles and miles
I can see for miles and miles
I can see for miles and miles and miles and miles and miles
Oh yeah

You took advantage of my trust in you when I was so far away
I saw you bolding lots of summer fries and now you've got the nerve to say

That you don’t want C
Well, that's as may be
But you gotta stand trial
Because all the while

I can see for miles and miles
I can see for miles and miles
I can see for miles and miles and miles and miles and miles
Oh yeah

I know you've had mean C, now here's a surprise
I know that you have 'cause there's magic in my eyes

I can see for miles and miles and miles and miles and miles
Oh yeah

Sun’s frightful power and the cost of Sol are mine to see on check days
You thought that I would need a crystal ball to see fright through sun braise

Well, here's a poke at you
You're gonna hope docs skin true
You're gonna lose that smile
Because all the while

I can see for miles and miles
I can see for miles and miles
I can see for miles and miles and miles and miles
and miles and miles and miles and miles

Tuesday, June 11, 2013

My 50th birthday ‘present’ in 2003 turned out to be a melanoma diagnosis. There was a brief period when the medics seemed pretty certain I was at Stage IV, and at the time that diagnosis would almost certainly have been a death sentence. Luckily, it turned out I was ‘only’ at Stage IIIc and the treatment games began.

I’ll be turning 60 on Thursday, am damn glad to still be here, and there’s just one thing I want for my birthday. A cure for melanoma and the demolition of the Hotel Melanoma. And a cure for every other brand of cancer too. My birthday wish isn’t going to come true but, oh my, how very far we’ve come in improving cancer treatment over the past decade, particularly for Stage IV melanoma

So instead of celebrating the cure, I’ll be heading out to the golf course on Thursday and seeing how few holes it takes me to shoot my age. Just hoping to keep the ball inbounds and make it to the back nine, I’ll sign off with the Hotel Melanoma rendition of U2’s “Bad”…

If you wish and yearn away
If you bare yourself in U again
If I could, yes I would
If I could, I would
Let it blow
Dismember
Dislocate

If I could blow this
Lightless fright mine to the wind
Leave this park of pain
See you walk, walk away
Into the light
And through the pain
Into the high life
And through C’s flame

If I could through myself
Set your spirit free
I'd lead your heart away
See you break, break away
Into the light
And to the rays

To let it blow
And so to break away
To let it blow
And so break away

I hide from rays
I hide from rays
Hide from rays
I'm not weeping
Oh, no, no, no

If you should ask then maybe they'd
Tell you what I would say
True colors lie in hues of black
Hue warriors fly brand Black C flag
Colors clash, collide in derm doc eyes

Wednesday, June 5, 2013

I’m often awestruck by the utter cluelessness I see in some of the marketing strategies of the indoor tanning industry. A case in point is my neighborhood chain store tanning salon, which is called “Tan Your Hide”. Really. All I can think about when seeing that name is the process of treating skins of animals to produce leather. And, of course, brown leather production is exactly what their frequent customers are doing, although I’d imagine that’s not what the salon owners intended to suggest when naming these stores. Their advertising slogan is “it’s time to get your glow back”. And since radiation therapy no doubt lies in the futures of some of their repeat customers, I guess these losers of the tanning bed lottery will someday be ‘getting their glow back’ in a way they’d never quite imagined. Although, once again, I sort of doubt that’s the kind of “glow” the chain’s advertising agency wanted prospective customers to think of when coining this ironic slogan.

With heartfelt gratitude to the indoor tanning industry for supplying me with such rich material for yet another blog post, I’ll sign off with the Hotel Melanoma version of The Beatles’ “Don’t Let Me Down”…

Tuesday, June 4, 2013

Author’s Note: Every so often I take a run at providing some information in this blog that might actually be useful for my melahomies, and today is one of those days. I was contacted a few days ago by Molly Clarke with Social Disability Benefits Help, who offered to write an article about Social Security disability benefits for people with melanoma. She’s written the following very informative piece that is specific to melanoma patients…

Social Security Disability and Melanoma

After you have been diagnosed with melanoma, your life will undergo various changes. Your time and energy will be spent discussing treatment options, visiting specialists, and focusing on recovery. Symptoms and side effects may even force you to take time away from work. The resulting expenses and loss of income may cause a significant financial burden.

If you find that after being diagnosed with melanoma, you can no longer work or earn a living, you may be eligible to receive Social Security Disability (SSD) benefits. The following article will provide you with a general overview of the Social Security Disability program and will prepare you to begin the application process.

Medical Eligibility Criteria

SSD benefits are governed and distributed by the Social Security Administration (SSA). The SSA has very strict medical and technical criteria put in place to determine an applicant’s eligibility.

When evaluating your claim, the SSA will first assess the severity of your melanoma by consulting the official guide of disabling conditions known as the blue book. The blue book contains listings of potentially disabling conditions and the specific medical criteria that an individual must meet in order to qualify. Melanoma appears in the SSA’s blue book under Section 13.03 B. To meet this listing, you must be able to provide medical evidence that proves the following:

• Your melanoma returned after surgical removal of the original lesion and the surrounding tissue

AND

• Your melanoma has spread to other locations, in at least one of the following scenarios:

1. documented metastases in one or more lymph nodes
2. metastases in four or more lymph nodes, if the presence of tumors cannot be clinically documented through obvious methods; or
3. skin metastases in adjacent or distant sites from the location of the original lesion

If you do not meet these specific criteria, you may still qualify for SSD benefits. If the SSA finds that your condition is equal in severity to another condition listed in the blue book, your application may be approved.

If you do not match or equal another condition, the SSA will then review your residual functional capacity to see if you qualify under what is known as a medical vocational allowance. Essentially, this means that the SSA will evaluate the severity of your limitations and, if they decide that melanoma keeps you from working, they will award you benefits even though you do not meet a blue book listing.

Technical Requirements for Disability Benefits

The SSA runs two separate programs that provide financial assistance to disabled individuals—SSDI and SSI. Each of these two programs has technical eligibility requirements that applicants must meet in addition to the previously mentioned medical requirements.

• SSDI is funded by the FICA taxes that workers throughout the country pay into the system. Therefore, eligibility for SSDI is determined by an applicant’s employment and tax history. To make it simpler, the SSA assigns a certain number of “work credits” to each quarter that an individual earns income and pays taxes. To qualify for SSDI, applicants must have earned a certain amount of work credits. Learn more about work credits and SSDI, here: http://www.disability-benefits-help.org/content/social-security-programs.

• SSI is a needs-based program that offers benefits to disabled and elderly individuals. This means that eligibility is determined by a person’s financial needs rather than their work experience. To qualify for SSI, an applicant cannot exceed very specific financial limitations. SSI is often a good fit for people who have very little income and who have not earned enough work credits to qualify for SSDI.

In some cases, individuals with limited work credits and very low income can qualify for both SSDI and SSI. It is also important to note that, while neither SSI nor SSDI are health insurance programs, there are health care options that accompany both programs. After a two year waiting period, individuals who qualify for SSDI may become eligible for Medicare and individuals who qualify for SSI automatically qualify for Medicaid. Learn more about Medicare and Medicaid, here: http://www.disability-benefits-help.org/faq/medicare-vs-medicaid.

Applying for Social Security Disability Benefits

The SSD application process can be long and complicated. In fact, many initial applications are denied. To prevent this from happening to you, it is important that you collect thorough medical and financial documentation to support your claim. The SSA will view this documentation as proof of your disability. Any missing or incomplete records can compromise your claim and cause you to be denied.
Documentation should include records of the following:

• Your diagnosis
• Relevant lab results and medical imaging
• History of hospitalizations
• Treatments and response to treatments
• Official statements from your doctor regarding your symptoms and ability to work

Once you are ready to begin the application process, you can do so online at the SSA’s website or in person at your local Social Security office. It is important to remember that once you submit your application, it may be several months before you receive a decision. If your initial application is denied, it is important that you don’t give up. You have the right to appeal this decision. If you are prepared and persistent in your efforts, you will be able to receive the financial assistance you need.

For more information about applying for SSD benefits, visit Social Security Disability Help on Facebook or contact Molly Clarke at Social Security Disability Help

_____________________________________________

But you just knew that I’d have to write some fractured lyrics too. To the tune of The Band’s “The Shape I’m In”…

Go out yonder, treat C and rally
Mole docs frown, have to wonder 'bout the tally
Oh, you don't know the shape I'm in

Can anybody treat my Ray C?
This skinnin' of moles will drive me crazy
Oh, you don't know the shape I'm in

I'm gonna go down to the doc - tor
But I ain't gonna pump him, no, no
I'll just be looking for my fate here
And I'll hear 'bout place where C's been! Oh!

Out of nine lives, I've spent seven
Now, how in the world do you do the bread win?
Oh, you don't know the shape I'm in

I just spent 60 days in the jailhouse
For the crime of having no dough
Now here I am back out on the street
For the crime of having nowhere to go

Pay your rent or pay your druggers
Looks like it's one or the other
Oh, you don't know the shape I'm in

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About Me

My blog reflects an ongoing quest to find the good stuff and the funny stuff I've stumbled into during my stay at The Hotel Melanoma since receiving a Stage IIIc diagnosis in 2003. And to raise awareness about this relatively unknown brand of cancer. If you find it of value in your own quest, please share it with others and make a donation to your favorite melanoma nonprofit organization to fund melanoma education, prevention and treatment research. If you're wondering why my golden retriever, Jordan, is pictured here, well, he actually writes most of my posts and he's a lot better looking than me.

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A Thank You Note to Commenters

Comments, positive or otherwise, are the lifeblood of a blogger and I really do appreciate receiving and reading them. So, thanks for taking the time to let me know what you think about my blog. I know that some of you are currently enduring some pretty rough times. Please let me know how you are doing and whether there is something I can do to help.

Important Disclaimer!

At great risk of sounding like the corporate lawyer I used to be by making the perfectly obvious perfectly clear, here goes. Neither The University of Colorado Cancer Center nor any of its affiliated entities or individual persons (whether living, dead, or in some alternate plane of existence) has anything whatsoever to do with this blog. They don’t endorse it, sponsor it, approve it, or sanction it. Most likely they are completely unaware of it because they have better things to do than search the ‘net for blogs of patients, much less read them. Moreover, to the extent they are aware of it, they may not even like my writing or sense of humor. Nevertheless- and I’m acting solely and exclusively on my own here- I still hope you give them money to support the cause of melanoma (or other cancer) research. They do good work.